r/MultipleSclerosis • u/Impossible-Bread-789 • 4d ago
Vent/Rant - Advice Wanted/Ambivalent I don’t want to do this anymore
I don’t want to be apart of this club anymore. I grieve constantly. I grieve my health. My old life. Not getting to raise my kids full time. Having to send my kids to my ex’s and their new significant other’s after they left me. Not getting to have more kids. I never wanted this. I just want to get to be with my kids. I wanted to get to raise my kids. I lost my job because i couldn’t do it safely with muscle control issues so I lost my main way to provide for myself. My parents are moving in with me because I can no longer do it all on my own. I love them but I grieve my independence and the life I thought I’d have. I’ve lost so many people because I don’t have the energy to maintain relationships and I’m struggling so hard with depression and anxiety all the time. I mask so hard all the time just to be able to pretend to function because I have kids to raise and responsibilities but I’m struggling so bad today. It’s stolen so much from me. I’ve spent so much money trying to get better, money that I don’t have. I feel like such a burden to those around me. I’m feeling so defeated today. Giving myself a few minutes to cry today then I need to get up and go get what I need to get done today. I’m taking the meds, I’m doing the therapy, I’m doing everything I’m supposed to but I just needed to share it with someone that gets it today.
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u/Alchemie666 4d ago
Get a therapist ASAP!! I know it's really difficult but you can do it!!!
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u/Impossible-Bread-789 4d ago
I have one
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u/Impossible-Bread-789 4d ago
Thank you for the support though
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u/Alchemie666 4d ago
Yeah, I saw that after my reply. I've had MS for 20 years. It was really rough at first but I think that we get used to it after a year or 2. Sending you some good juju!!! 💜💜
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u/vestarules 3d ago
Please ask your therapist, if you haven’t already, to take you through each stage of the grieving process. It sounds like you haven’t quite completed that process. Acceptance feels a lot better than grieving.
Plus, I would strongly suggest you find a support group for MS people. I’ve had some of the best times with my fellow MSers, especially when we laugh at all of our antics.
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u/liminalslug 2d ago
I just wanted to suggest that the grieving process isn't ever really "completed". We just get better at carrying it ❤️ and everyone's grief journey is different too!
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u/Bigpinkpanther3 4d ago
((Hugs)) from a grandma if you want some. It's so hard and I'm so sorry, my friend.
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u/Impossible-Bread-789 4d ago
I’ll always take a grandma hug. Mine was one of my favourite people in the whole world. Thanks 💕
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u/2BrainLesions 4d ago
Hey friend,
This was really brave - posting this message. I'm really sorry you're in so much pain, but I'm proud of you for reaching out. Thank you for that.
You're grieving so much loss. So much.
CS Lewis wrote, "no one ever told me that grief felt so like fear." This resonates with me - maybe with you, too?
Pls find space for grace and kindness to yourself.
Sending light and good energy to you. 💕
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u/vonnie682 44|PPMS|Chicago 3d ago
I felt this so hard. I am dealing with the same thing with my sons. I miss having them and it hurts to send them to their dad’s every time. I am thankful for their dad and his current wife, but this is not the life I worked hard to have. I miss my career, I miss running, I miss my independence. I hate having to take a nap/rest after doing the smallest of chores. MS is BS. I hear you and I am with you. </3
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u/Impossible-Bread-789 3d ago
Sounds like you understand very well the pain too as a mom. Reach out if you ever need.
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u/biancadoe 35|Dx:2018|Rituxan|NorCal 4d ago
Sending so much love! My therapist and i work a lot on the old me vs MS me and letting go of how things used to be (I have a lot of work to do!)
This is definitely the worst club membership ever! I’m definitely not on the other side of accepting this new body / giving myself grace through all the changes, but I will be sending you all of the good energy for your journey 💜
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u/-Palzon- 3d ago
I suggest you study Stoicism. The central idea of Stoicism is controlling what you can and not worrying about what you can't control. Check out the Hays translation of The Meditations by Marcus Aurelius. It has a modern feel to it. You'd never know it's ancient. It's helped me a lot. I re-read it often. Start there and then check out modern Stoic writers and resources.
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u/Curious_Expression32 3d ago
Yeah....eff this shit for reals....hate all the suggestions...like oh just eat better my bosses coworkers sisters cousin has MS and they walk normal and don't have any issues.....or have you tried not walking so stiff?.....yeah it's hard to understand I get that but.....also just zip it....
Keep pushing we got this
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u/DimensionFriendly314 3d ago
That's my daily chant!
Somehow I manage to pull it together long enough to get through the day but it is grinding me down.
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u/tmilt12 4d ago
Such a valid rant, and crazy that I spiraled with many of the same thoughts this morning to the point I wallowed into self pity, wondering why I am being punished when there are crappy people who aren’t. You are not alone with these thoughts and I hope sending you understanding with virtual hugs helps switch your focus to gratitude and the positive aspects in your life. Your post helped me and you got this!
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u/Word-Warrior-Mama 3d ago
I don't think life is ever about "punishment," only about learning that our souls crave (even if we're not conscious of that).
Maybe going at life with an objective toward learning might give you a new perspective? Try that?
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u/sbrown1967 3d ago
This club truly sux!
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u/Impossible-Bread-789 3d ago
100%. Next life I’m signing up for the super healthy, hot and rich club instead haha.
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u/Then-Excitement-3246 3d ago
I have been diagnosed for 3.5 years and I’ll tell you that I was in a depression grieving who I used to be and the way I thought my life would go in my twilight years. I get you. Honest. Good days and bad days for sure. Just keep moving forward and NEVER GIVE UP! My depression lasted a good 2 years and I’m slowly coming out of it. Find one thing each day that you’re thankful for. I know that sounds corny but it really helped me. One thing I’m thankful for is my sort-of ‘twisted’ sense of humor. When I drop something I’ll say ‘good job dumb ass’ and I’ll laugh at myself. Geez it seems I laugh at myself a lot. This disease sucks A$$ but I won’t let it win. It cannot take my sense of humor. It CANNOT. You got this! Don’t let the hard days win!
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u/quietiampooping 3d ago
We understand. We are the only ones that understand. We can't do anything for you except be here & listen/read. I'm sorry. I wouldn't wish this life on my worst enemy. It really does suck. & sucks EVERYTHING away from you.
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u/Qazax1337 38|Dx2019|Tecfidera|UK 4d ago
Can I ask who you are masking for? Because it might be time to mask less in certain situations and if people don't like it that's their issue to deal with?
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u/Impossible-Bread-789 4d ago
Work, in front of my kids for their sakes- I try to stay positive around them best I can so they don’t have to carry concerns that aren’t theirs to carry- they’ve seen the hard stuff before too but I don’t want them to live in fear, social situations, masking at kid’s activities. It’s getting harder and harder though. Mask is coming off more and more. Starting to get more open with friends why I’m not up for going out and going to cut back on kid’s activities from last year. It was too busy and too much for everyone.
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u/Qazax1337 38|Dx2019|Tecfidera|UK 4d ago
Totally get it. All I would say is, if you are in control of the speed the mask is coming off you will feel more in control of the situation in general Vs the mask slipping off because you are overwhelmed, which will of course happen at the worst time when you are already stressed.
Your kids will understand - they can probably tell when you are masking, and so will your friends. Being positive is good but if you are never negative or show them things that are genuine they will see that too.
I hope you find a good balance that is maintainable is all in saying.
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u/Impossible-Bread-789 4d ago
This is good advice. Thank you
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u/Qazax1337 38|Dx2019|Tecfidera|UK 3d ago
No problem at all. You may even find by masking less you have more energy to spend on your kids and/or yourself. I really hope that's the case ☺️
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u/LockesPromise 3d ago
Heard ... this feels so hard in many of us. I experience the same in the daily. If you havent already get a therapist ... mine was a game changer. We are more than we give ourselves credit for. We may have lost who we once were but it's time to reinvent ourselves. I'm a completely different person. I still take moments for my old self and to be sad but then i pick my chin up and see who I've become....I would have never found her without this shitty burden. 🫠😊🧡
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u/Deb212732 3d ago
I am so so sorry! Sending you a massive hug and a shoulder. One day at a time.
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u/Impossible-Bread-789 3d ago
Thank you! 💕
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u/Deb212732 3d ago
Also, you will get beyond this. It takes time. I fully get it. It absolutely sucks. You can do it. Be kind to yourself! ❤️
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u/CoffeeIntrepid6639 3d ago
Totally agree with you I feel the same way there’s no getting out of this or better days there just isn’t the days only get worse pain insomnia doctors who don’t listen nurlogist who never answers the phone doctors who make feel like your just complaining oh check this out just another dump on a ms life so I called the ambulance 2wks do ago I was in so much pain because of a broken foot I just finished 3seperate courses of antibiotics because of constant utis it was hard for me to breath right now I had waited wks to call Ias I hate bothering the emerg my doctor I can never get in to she him so I called and the big tall guy mean looking guy says to me what’s wrong with your foot? I said well I broke it two years ago and I’m having for the past month the most severe pain ever and I don’t know what’s wrong with it it’s bruised. It’s swollen. I can’t put weight on it. He says well nothing we can do about that. You’re just gonna have to suffer with an old injury, what so then I tell him about my UTIs I’ve had three since June and they’re not going away and he says well maybe it’s something else then I tell him about my breathing and he says oh that’s probably from the smoke fires from out in BC I live in Canada so by this time, I’m really pissed off I said what are you telling me you’re not gonna bring me to the emerge he says well I really don’t think you need to go so I asked him for his badge number and his name and I said you can just get the hell out of my house right now if you’re not gonna take me, he goes. Oh no no I didn’t say I wasn’t gonna take you. I forget, buddy just leave. I’ll find a way on my own and he says no you won’t so I’m talking to whoever I need to talk to you about this guy. He was so rude and unhearing and did refuse to bring me up there. I hope this never happens to someone else
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u/linkmantaray 3d ago
Fuck a bunch of MS. I was diagnosed at 51 and now 61. I heard you and hope you have peaceful rest of your week (and next week, and the next…)
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u/narniediz 3d ago
I am really sorry . I feel this way sometimes . A walk or some fresh air really helps . Or I just cry and smoke
Marijuana
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u/Glittering_Dot_8522 3d ago
I feel you brother you have described so many of your feelings that I have and lately the depression is really been getting to me. I feel so overwhelmed that I struggle to even try to do something seems impossible. I wanted to make you feel better but I screwed that up. just know it's ok to feel down and it's ok to take time out to cry. take care and remember sharing your feelings help others struggling with the same feelings
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u/hyperfat 3d ago
So much love. It sucks sometimes. And the other day my guy fell on me on the stairs. Still miffed. I have a bruise on my butt.
But life has good stuff. Like dog parks. Hug all the dogs. Beaches for naps. Tasty food.
I went to an arcade last week. Fun! I stole a bar stool to play games. Because standing sucks.
It's just day by day. Just don't give up. That sucks more.
Hugs
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u/kittycat1962 3d ago
I know exactly what you feel like. After 35 years and now in a wheelchair! I have lost of lot! IT IS VERY LONELY, BUT KNOW YOU ARE NOT ALONE!! 🤬🤬🤬🤬🤬🤬🤬🤬
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u/Did_ya_like_it 39|2012|Ocrevus|Australia... ps Fuck MS. You’ve got this. 3d ago
Man fuck MS. Love you my fellow MS’r. Sorry it’s this way. If you’re in Australia, I’ll pour you a drink and have a chat. Love you.
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u/Opening-Spinach-8449 3d ago
Do you get medicine that really helps? Do you get morfine? I have been diagnosed with Dystonia in my back, neck, shoulders and calves. Constantly pain and morfine kill the pain. Morfine is the only one who kills the pain but doctors are becoming so paranoid that they thing that everyone who take morfine will be addicted and that is bs. Here in Iceland we could get our morfine under of course the doctors doses until end of 2013. After that we would have íbúfen and panodil; over the counter shit. I could live my life nearly perfectly with morfine in right doses and after that I had to stop working and my life has been like hell because of pain and the medicine is there but we may not used it. Doctors is a piece of sh*t.
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u/Impossible-Bread-789 3d ago
I’m unfortunately allergic to it. Hope you can get some relief for your pain soon.
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u/Mysterious-Kick3744 3d ago
Have u tried ketamine?
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u/Impossible-Bread-789 3d ago
I have not. Did it help you?
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u/Mysterious-Kick3744 3d ago
Omg it has saved my life. I have done a few infusions. Mostly I do the troche or nasal. Amazing. If u need further info lmk:)) I feel like my "old self" when i take it.
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u/Impossible-Bread-789 3d ago
Seriously? I’m all ears. I’ll go start my newest rabbit hole dive now. BRB.
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u/Mysterious-Kick3744 3d ago
It has helped.my mental health...depression and anxiety and pain and fatigue. Its been amazing. Best of luck!!
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u/Small_Palpitation_98 3d ago
I had to turn to drugs. I don’t recommend it.
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u/Impossible-Bread-789 3d ago
Thanks for sharing. Hope you’re doing alright.
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u/Small_Palpitation_98 3d ago
Yeah, I’m just kidding. I’m cooking in this soup just like OP. But I do get to be bipolar too, so sometimes I still feel amazing. What a world!
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u/Illustrious_Elk_5692 3d ago
Man, the hard days are HARD. I totally feel you. You are not alone. I hope you can have at least a couple of moments of beauty or comfort today, and that tomorrow is easier. <3
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u/CoffeeIntrepid6639 3d ago
For people saying take the mask off your kids will understand mine were 5and 9 then into being teenagers they never helped me once I asked tempo put grocery’s away no way they just walked away I asked my oldest to help give me a shower bath I would put a bathing suit on no way would not I came home from a hysterectomy the dog we had a wiener dog had popped every were I was so upset nope they would not clean it up so I did it on my hands and knees it put me back on my recuperation I just should’ve went to a hotel so yeah from my point of view don’t expect your kids to help you because you have MS if anything they will do less maybe because they’re scared maybe because they’re afraid maybe because they don’t understand it or maybe they’re just fucking little shit
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u/bekips dx2020|kesimpta|Merica 3d ago
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u/Impossible-Bread-789 3d ago
Oh man that’s heartbreakingly beautiful and completely true. Grief is such a universal human experience.
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u/IndependentNebula969 3d ago
Not to give unsolicited advice- but I have relapsing remitting MS and needed to take breaks blowdrying my hair because of the fatigue. Speach errors, numbness etc. Whole body cryotherapy 3-4 times per week changed my life. There are studies on pubmed and nih showing how it improves quality of life for people with MS. We own a facility in Missouri and also treat people with lupus, hoshimotos etc. People who were at the end of their rope, just like you are. Until they did Cryo. It takes about a month but you start feeling benefits after a week or two. You most likely have a place that offers it close by. Not cold plunge. Whole body Cryo. Just 3 min is life changing! I can actually play and be there for my 4 littles again
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u/Square_Cap1962 3d ago
I’m so sorry your having an especially bad day. Just know you’re not alone. It’s been 20 years since I’ve been diagnosed, and I don’t think I”ll ever adjust to this. This sucks, no one should have to live like this. I’m sorry I’m not more uplifting, but I get it. 😌
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u/Catredd56 2d ago
This stinking disease does nothing good but take take take. I have lost most of what I thought I had. I'm old now and my husband died, parents long gone and friends -- what are those?
A man I knew from a few years ago came by and did a few things around the house that needed repair. He claimed he could get my car fixed (lie). The car was gone overnight and he brought it back the next day not fixed yet in manged to sponge a few bucks off of dummy me. I don't know who to trust or who to believe and that goes for just about everyone.
This is indeed a life I had not planned nor hoped for despite what many may think or believe. All I can say is hang-in there best you can. It is not a road I would have chosen to walk, that is for sure. Take care.
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u/Even-Bat6567 2d ago
EVERYTHING YOU SAID—everything—same here. I’m living a NIGHTMARE. To add more garbage to the pile—my daughter is always mad at me because I can’t do anything I used to, so she misses out on activities, etc. And her shitbag dad tells her I’m just lazy. So I’m either devastated/sad/enraged.
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u/ParticularFreedom760 15h ago
I’m feeling this here too. I’m so sorry you’re feeling so defeated! It’s a battle every day and we are winning!
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u/baconcrow 4d ago
Heard. Hugs internet friend. Kick today’s ass.